Constant Ongoing Headaches

Hi Apex,
My name is Michelle and I am in a similar situation as you. When I was 23 years old, I literally woke up with a headache that has never gone away. (I even remember the date that it happened). Now, it has been a little over 5 years and I haven’t had a pain free day yet. My pain jumps all around and is not localized like yours. I also suffer from TMJ and neck issues.

Like you, I have had every test you can think of in the US. I’ve gone through all sorts of treatments ranging from DHE to Ketamine. I have seen doctors all over the US and been to several clinics. I’m basically at a dead end in the major medical headache institutes though I do have an appointment at Georgetown in January. I either need to start searching different universities or over-seas like Germany or Japan where they are doing some interesting research.
I am an outlier. I hyper-metabolize medications and if something works, it works only for about 3-4 months or I experience such serve side effects that I can’t tolerate it or the most likely situation is that it just does not work. Of course, there are exceptions to every rule, but my list is very short.
I am currently 28. I am always tired and exhausted. I am on SSDI because I just haven’t be able to work. Fortunately, I am not without a support system. They are all wonderful, especially my fiancé. She also deals with chronic pain, so we both can relate to each other on a level that your normal friends don’t face. Also, that is why I love this forum. It is an excellent place to converse, gather info, and share stories. I think anyone who is struggling with something so terrible needs a place (even in the digital world) to vent, whine, cry and also share good news and happiness.

My suggestion to you is never give up. Always search, explore and push the boundaries. Sometimes it a crazy idea that may just work or it could be just the right cocktail of medication (this seems to work for most people). I really liked this book call “All in my Head” and I bought it on Amazon. The Mayo Clinic on Headaches has some good information and it is probably in your local library. If you would like suggestions of places I’ve been, treatments I’ve tried, medications, etc, please feel free to drop me an e-mail.

I really do wish you the best of luck. There is no other way to say this, but it sucks.

Wishing you to be pain free.

Peace.
Michelle

I really understand your frustration! I deal with chronic daily migraines. I have tried so many different medications...maxalt, relplax, zomig, imitrex, toradol, klonipan, zanaflex, migranal nasal spray, botox injections, DHE protocol at UVA Hospital. My list goes on and on. So funny today I went to pick up a RX that my neurologist called in and it was Frova another triptan that I know I can't take! triptans make my chest tight and my throat feels like it's closing in, so why he called that in I'll never know! I have insurance but it wouldn't cover the bill to go to a headache clinic. I have had brain surgery due to having scar tissue on the right side of my brain. My migraines are always on the right side. Right now I am taking lamictal for seizure control and toradol along with phenegran for the migraines. Also have to take a muscle relaxer for neck pain. None of these meds are helping! It's frustrating but I'll never give up on Hope!

I don't see my neurologist again until Dec 14th. I kinda wish he'd do some kind of test to check my memory issues...I'm sure they are coming from the brain surgery and the chronic migraines aren't helping me any! I've also tried botox injections and nerve blocks with no success. All these treatments can bankrupt you! Thank goodness for insurance, but it still leaves little bills coming in that have to be paid. I wanted to go to a doctor in Houston Tx that does nerve decompression surgery but my insurance thinks they know best and they turned it down, however they don't blink to put me on more drugs they just don't want to cure the problem it seems. grrr!!!

My thoughts and prayers go out to you all!

Blessings ~ Mercyme

Hello all,

I thought I would write back in since it has been a while. I really don't have any significant update or signs of improvment. I have been trying a combination of acupuncture and physiotherapy, it was going well for a while and the symptoms were lessoning a little bit but they have recently come back with a force.

I have since come down with a sinus infection and that combined with my daily headaches is making life miserable.

Does anyone in a simular situation have any positive updates? Michelle how did it go at Georgetown?

Any insight is always great.

Thanks,

Apex21

After five years of a constant headache and the frustrations of running from one doctor to the next, only to be prescribed medications that did not work or only worked short term, I have had four weeks without a "significant" headache. Here is my story.
about five years ago, when my children were 1, 3, and 5, I woke up one morning with a headache. Over the next couple of weeks the headache intensified and was constant. The majority of my pain was in my temple region and my eyes were extremely sensitive to light. I tried OTC medications which had no effect. Scared, I went to my GP, who ordered blood work and a CT scan. My lab results and CT scan came back with nothing that would be the source of my headache. (I did have a very high ANA count.) She prescribed a handful of medications which did not help. Over the next five years, I doctor-hopped trying to find the source of my pain. Unfortunately, it is very hard to find a physician who will work to find the cause, rather than mask it with medication. I did find some relief with prescription strength Aleve and Toridol, but it only took the edge off. Because of the possible side effects, I would alternate the medications and only take it every three days or so. Those were the days I would pull myself together mentally as well as catch up on any physical work I couldn't manage the other days.
about four months ago, these medications stopped working. My head pain stayed at about an 8 or a 9. My husband saw my hopelessness and called a friend who is a general surgeon for guidance. He knew of a neurologist who specialized in headaches, Dr. Blake in Houston. I saw Dr. Blake and immediately began a series of nerve block and steroid injections in the greater and less occipital regions (the back of the head.)
These injections lessened my pain and brought me new hope. However, the results were not lasting. Because they were effective I was told I was a good candidate for nerve decompression surgery. I consulted with a local surgeon but ultimately decided on a surgeon in Dallas, Dr. Bardia Amirlak. He reviewed my detailed headache journal and was convinced I would receive the most benefit from surgery in the greater occipital region as well as two regions in the front that he refers to as Migraine I and II.
Immediately following the procedure, I had head pain but it was very surface, unlike the deep, stabbing pain of a headache. On day two, when I woke up, I knew something was different. My sensitivity to light was gone! My pain level was a 2 or 3, but again, was very surface. And this was with no pain medication! I am four weeks post-op and feel great! (The only time I have head pain is when I don't follow the doctor's orders and do too much. i.e. moving furniture, playing baseball with my children, etc. It is very short-lived and subsides with rest and ice.)
I know this surgery is not the answer for everyone with a persistent headache or frequent migraines, but I want to share my story so that more people can know of this procedure, which is not well-known, even among physicians, although medical studies have proven it to be very effective.
Stacy